Friday, February 22, 2013

A memory arrived in the mail the other day. It wasn’t unexpected, as I had ordered the item on eBay about a week earlier. My wife helped me open the package, and as its contents emerged my eyes fell upon an object that seemed like a long-lost piece of myself, a relic long consigned to the mists of remembrance suddenly made real once again. There in my one working hand was a nearly 32-year-old copy of “The Twilight Zone” magazine, dating back to August, 1981, its cover as instantly familiar to me as the face of a rediscovered old friend.

I opened the magazine and flipped through the first few pages until I found the publication’s masthead, the long column of titles and names of the people who worked to publish each issue. Scanning the list, my heart jumped a bit as my eyes landed on a name that I knew would be there but which somehow managed to surprise me nonetheless. There it was, under the names of the Editor and Managing Editor, just as I remembered: “Editorial Assistant: Marc Stecker”. Me. Suddenly I was 17 years old again, as excited to see my name in print as I was the first time around over three decades past, back when all of life was still in front of me, and my current Twilight Zone like circumstances were beyond imagination.

I worked at The Twilight Zone magazine during the spring semester of my senior year of high school. Because I attended what is considered to be New York City’s best public high school, Stuyvesant High, the school's bulletin board listing afterschool jobs attracted more than the usual busboy and supermarket positions most kids worked at in those days to earn their weekend money. I was lucky enough to be the first to respond to a new posting looking for a proofreader to work at a publishing company uptown.

When I nervously arrived for my interview, I learned that the publication I was applying to work for was a magazine dedicated to The Twilight Zone, one of my all-time favorite TV shows. Back then, before the advent of cable television, when we had to make do with (gasp!) all of seven TV channels, The Twilight Zone was a syndicated staple of local non-network television broadcasts. I can’t speak for the rest of the country, but in New York City the show was televised seven days a week, usually with back-to-back half-hour episodes airing late at night in glorious black and white. Even before working on the magazine, I was already familiar with virtually every episode of The Twilight Zone, having viewed most of them numerous times. I was far from alone in this expertise; in those days before video games, my friends and I would sometimes while away the time recounting the diabolically clever plot lines of Twilight Zone episodes, even though we all knew most of the shows by heart.

The original Twilight Zone series was produced in the late 50s and early 60s, the brainchild of creator Rod Serling, who introduced each episode dressed in a suit with skinny lapels and tie, a cigarette usually dangling from his fingers. The show featured off kilter tales with a very human touch that almost always ended with a mindbending twist, most episodes falling into the sci-fi/fantasy realm. In The Twilight Zone nothing was quite what it seemed, and you’d better be careful what you wished for, because wishes would often come true in unexpected and sometimes – but certainly not always – unpleasant ways. The episodes were deftly produced and directed, and were written by some of the top TV and film wordsmiths of the day. Several episodes starred actors who were already well known, or who soon would be, including Robert Redford, Jack Klugman, Burgess Meredith, and Agnes Moorehead, to name a few.

Much to my surprise, after a brief interview with the magazine’s Managing Editor, I was hired on the spot. My daily tasks were devoted to assisting the very small staff of The Twilight Zone, which was primarily a two-person operation, with responsibilities split between an Editor and a Managing Editor, who were tucked away in a small office at a large publishing company. The company's primary product was a second-tier “adult” magazine (yes, the kind featuring naked ladies – a definite perk as far as this 17-year-old was concerned), with a large staff devoted to publishing it and some sister publications. The Twilight Zone magazine itself turned out to be not some cheesy fanzine, but an impressive, very literate publication, featuring not only information about The Twilight Zone and other science fiction and fantasy movies and TV shows, but also original fiction in the Twilight Zone tradition. As such, every month it featured half a dozen or so new short stories by known and unknown writers, including some very famous authors such as Stephen King and Joyce Carol Oates, stories whose typewritten pages I not only got to lay hands on but help copy edit, making sure the typeset “galleys” for publication were free from mistakes such as misspellings and misplaced punctuation. For a kid with literary ambitions, this was intoxicating stuff.

As I sat in my wheelchair leafing through the yellowed pages of the old magazine, a steady stream of long dormant memories roused from hibernation. My job at the publishing house was my first foray into the everyday world of working adults, and I remember how surprised and amused I was at the controlled chaos around me. Though older and allegedly more mature, these folks seemed as full of foibles and quirks as my teenage friends and classmates. Did anybody ever really grow up?

One of the big bosses at the publishing company was a man with a hair-trigger temper, who was plagued by physical tics that worsened the angrier he got. The editor of the magazine was a fellow named T.E.D Klein (who would later become a not very prolific but well-respected horror author), a man in his mid-30s with a sharp mind and dry wit. I vividly remember the big boss once flying into our office in a blind rage over some relatively minor transgression, screaming wildly as his tic ridden body Increasingly took on a mind of its own, his anger manifesting itself physically in the form of his uncontrollably pounding himself rhythmically in the center of his chest with his right forearm. I of course was horrified, but I could see T.E.D desperately trying to suppress his bemusement, his face weirdly puckered as he bit the inside of his lip in an attempt to not break down in uproarious laughter at the sight of the lunatic in front of him. So, this was life in the working world of adults. How strange.

Although I only worked at the magazine part-time for six months or so before going off to college, those days were brimming with teenage drama and angst, and my time at the magazine was a heady source of pride. Not only did I get to work with the hand typed manuscripts of famous authors, but I also took part in helping choose photos and illustrations for the magazine (developing the deep crush on one of the freelance illustrators in the process), met a variety of interesting people (including Carol Serling, Rod’s widow), and generally felt very much a part of the team.

Holding that old magazine, dating back to a time when I was about to embark on a defining new chapter of my own life story, I wistfully recalled that peculiar teenage mix of omnipotence and insecurity, the future rushing at me filled with prospects both exhilarating and terrifying. Life itself beckoned, and the preview reel that played in my mind featured visions of fame and fortune, romance and adventure, success and recognition, tempered liberally by fears of abject failure and disappointment. Despite occasional flashes of bravado, I was a bundle of neuroses back then, more Woody Allen than Mick Jagger, but still, my visions of a grand future seemed tantalizingly possible.

The notion that my life would be upended by a creeping paralysis certainly never entered my mind, even though I was an accomplished hypochondriac. I feared cancer, brain tumors, even leprosy, but the prospect of paralysis never really occurred to me. Now, with my disease continuing to progress, all of those teenage notions of what was to be are painfully bittersweet, the decades old magazine that sat in my lap their physical encapsulation. Viewed from certain angles, my current circumstances could be fodder for one of the stories contained within its pages, and it has often occurred to me that in some ways I could very well take my place as a character in a Twilight Zone episode.

I’m the wannabe writer who strayed from his path, his literary aspirations forever lingering as a painful reminder of dreams unfulfilled, until he contracted a dread disease and suddenly found his written ruminations reaching a worldwide audience through a medium that didn’t even exist when his dreams were first formed. I’m the lifelong neurotic and hypochondriac who spent countless hours and dollars on psychotherapy, whose inner demons were only put to rest through the realization of one of his greatest fears. I’m the disquieted seeker of wisdom always searching the arcane for glimmers of truth, only to grasp that which is truly important when forced to the sidelines of life, unable to apply the lessons learned to the existence he once led, the life interrupted.

I’ve written this before, but in this context I think it bears repeating. If a fortune teller had told the 17-year-old me that at age 49 I would live with my beautiful wife in a skyscraper next to Lincoln Center, that I’d sleep and wake to my own schedule, that my writings and photos would be read, viewed, and valued by people all around the world, and that I’d spend my days free from the constraints of having to work for a living, I’d have been ecstatic, convinced that all of my dreams would be realized. Of course, that seer would have left out one little detail, one slight wrinkle, an asterisk attached to the story that would make all the difference between dream and nightmare.

Yes, in The Twilight Zone you must be careful to read all of the fine print and consider every nuanced possibility. My life has seen me go from working at The Twilight Zone to living in my own private version of it, which in itself might make for an interesting episode. As Rod Serling might have said in an introduction to that episode, “Presented for your inspection, a man watching himself disappear, one side of his body paralyzed, and the other desperately trying to hold on. He finds himself oddly off-balance, his right leg immobile and his left firmly planted in The Twilight Zone…”

So, has this Twilight Zone life delivered it’s final twist, or might there be one more to come, a happier one in my future unwritten? One can only hope, and hope is the precious legal tender of The Twilight Zone.

Sunday, February 3, 2013

Given the importance of rigorous, verifiable research in the practice of modern medicine, it seems a natural assumption that the doctors who treat us base their actions and recommendations on solid, irrefutable evidence. Evidence-based medicine, is, after all, the mantra that we as patients hear over and over again, especially when it comes to our inquiries into the implementation of alternative therapies that fall outside of the medical mainstream. More often than not we are told that there is simply no evidence for the effectiveness of this or that alternative therapy, and that rather than waste our time and energy on unproven and possibly dangerous unconventional remedies, we should stick to the tried-and-true, which almost always come in the form of pharmaceutical products produced by one of the giant multinational pharmaceutical firms, known collectively as “Big Pharma”.

The logic behind such thinking isn’t necessarily faulty. Untold millions of dollars are spent developing drugs and putting them through laborious clinical trials, the result of which is the evidence upon which “evidence-based medicine” thrives. Absent the data produced by this research model, the practice of medicine would be largely reduced to educated guesswork, based solely on the experiences and impressions of individual medical practitioners, which by definition would be limited in scope and might easily be skewed by subliminal prejudices and statistical aberrations physicians could encounter during the course of their careers. Relying instead on evidence amassed through years of rigid research encompassing thousands of patient hours makes deciding which medicine to prescribe or procedure to recommend an exercise in logic and intellectual reasoning, the cornerstones of all disciplines of modern science.

This all makes perfect sense, and indeed this very reasoning has fueled the rapid advances seen in many fields of medicine over the last half-century. However, if the evidence which is the foundation of evidence-based medicine becomes unreliable, or downright misleading, the entire edifice that is modern medicine stands in danger of collapse. To an extent that is almost incomprehensible, this is the very environment in which patients and physicians now find themselves operating, as the research published in scholarly journals and presented at medical symposiums appears to be increasingly biased in favor of the drugs being researched, to the point that physicians are now basing their treatment decisions on woefully incomplete data sets and trial results that conveniently leave out the negative while emphasizing the positive.

As is documented by British psychiatrist Dr. Ben Goldacre in his book “”Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients”, which was recently excerpted at Salon.com (click here), the trial evidence upon which doctors base their most important decisions is often misleading at best, and outright dishonest at worst. As more and more medical research is funded by the drug companies themselves, rather than by independent concerns such as foundations or government agencies, the results of that research appear to be becoming less and less reliable. Dr. Goldacre cites studies which show that research funded by pharmaceutical companies is far more likely to favor the drug being tested than studies funded by independent organizations.

One such study, conducted in 2007, looked at every published study investigating the effectiveness of statin drugs, which are commonly prescribed to lower cholesterol. The studies either compared an individual drug to another kind of treatment, or to a competing statin drug. In all, 192 studies were surveyed, and researchers found that pharmaceutical company funded studies were 20 times more likely to give results favoring the test drug than similar trials funded by independent concerns. Other studies looking at different bodies of research found discrepancies that weren’t quite so dramatic, but invariably found that industry funded studies were far more favorable to the drug being researched.

The reasons for this bias are many. Trial results can be manipulated by testing a drug against another drug given at a sub optimal dosage. Patient populations can be manipulated, so that only patients most likely to get better are used in the research. The researchers themselves, even those conducting studies that are properly designed, may be subconsciously biased by the knowledge that their paycheck is being funded by the pharmaceutical company whose drug is being tested. Whatever the reasons, the evidence appears to be irrefutable: the trial results upon which doctors base their treatment decisions are very often biased in favor of the treatment being tested.

To make matters worse – much worse – drug companies routinely fail to report negative research outcomes, never allowing them to see the light of day. The companies conduct many studies on a single drug, and only publish those studies whose findings are positive for the drug in question. Dr. Goldacre writes about a situation in which he did the very best he could as a doctor, only to later find that he had been misled by the very act of doing his due diligence. In deciding on an antidepressant drug on which to put a patient for whom other drugs had proven ineffective, Dr. Goldacre read every published study he could find on a new drug he was considering, which all showed it to be better than placebo, and as good if not better than competing antidepressant drugs. Later, Dr. Goldacre learned that, though he had read all of the available studies, he’d only received a tiny glimpse into the true research record of the drug he was investigating, Reboxetine.

Some time after Goldacre prescribed Reboxetine for his patient, researchers did a comprehensive survey of all the trials that had ever been conducted on the drug, including those that had not been submitted for publication in academic journals by the drug company, collecting their data through numerous requests to manufacturers and regulating agencies. They found that seven studies had compared Reboxetine to placebo. Of those seven studies, only one found the drug had a positive result, the other six found Reboxetine to be no better than a dummy sugar pill. Only the positive study was published for review by physicians. The six failed studies were never submitted for publication. Trials comparing the drug to competing drugs showed a similar pattern. Three trials, totaling 507 patients, found Reboxetine to be more effective than a rival drug. However, other trials, which used data derived from 1657 patients, found that Reboxetine treated patients fared worse than those on other drugs. These findings were again left unpublished, shielded from the view of the physicians.

Tragically, this situation is typical of the industry. The fact that pharmaceutical companies can fund their own studies and decide to only publish positive data is unfathomable. Would we let, say, automobile manufacturers conduct their own safety tests, and without question accept their claims that the cars they make are the safest in the land? Of course not, yet this same practice has been allowed to flourish in an industry upon which the health of the world has come to rely. The situation is outrageous, but is so endemic that remedies are difficult to come by.

The British Medical Journal, a highly respected academic journal better known these days as BMJ, has, as of January of this year, announced that it will only publish studies that allow access to patient data from all of the studies conducted on the drug in question. The editors of the BMJ lay out their case for this action in a hard-hitting editorial published last October (click here). If only other academic journals would follow suit. The pharmaceutical giant GlaxoSmithKline announced in October 2012 that it will open up all research data for investigation by physicians and scientists (click here). While this is an admirable step, it comes only after GlaxoSmithKline was forced to pay $3 billion to the Federal Drug Administration to settle three charges of fraud levied against it (click here), one of which included holding back data and making unsupported claims regarding its diabetes drug Avandia.

Another of the charges in the GlaxoSmithKline settlement was that the pharmaceutical giant used inappropriate tactics to influence physicians to prescribe their drugs, tactics which included paying large speaking fees to doctors and providing them free access to high-priced entertainment. Couple the reality that pharmaceutical companies have been allowed to bury negative trial data with the fact that these companies routinely use their huge sales forces to court practicing physicians with offers of all-expenses-paid trips to “educational symposiums” in exotic locales, free gifts and lunches, and sponsored lectures, and we have what some cases amounts to a completely rigged system.

As circumstances currently stand, physicians find themselves faced with a situation in which they can’t trust the research published in academic journals (often their only resource for such vital information), and many find themselves subject to conflicting influences offered by pharmaceutical companies, the success of whose products lies completely in the hands of these same physicians. The end result can only be that patients in general, who trust their very lives to doctors, can only wonder about the motivation and correctness of the treatment decisions made on their behalf. For MS patients, whose drugs can cost tens of thousands of dollars a year and some of which carry potentially deadly side effects, the gravity of these questions is only multiplied.

It’s a situation that truly boggles the mind.

The below video is a presentation given by Dr. Ben Goldacre on some of these very same issues. It's really a must watch…

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...